Introducing myself

[DarlinGin]

Greetings,

Seems like an eternity since I first wandered through this message board. In reality its only been a few months. At the time I didn’t post, everyone here seemed so much sicker than my husband (Bill) and none of it seemed relevant to where we were. Amazing how much and how quickly things can change!

March 20th was a huge turning point for us. Bill was supposed to be starting his second cycle of Vidaza that day. We never made it. After announcing his nose had been bleeding for 2 hours straight we made the second trip to the ER in as many days. Took four more hours to get the nose to stop bleeding. By then his temp was >103 so they admitted him. Thus began a nightmare I wouldn’t wish on anyone. Doctors and nurses who did not even know what MDS was, his own oncologist on vacation, a staff that wouldn’t listen to anything I had to say, and lots of mistakes. After a week on the oncology floor he ended up in ICU. Being told he was expected to die floored me.

Then he got better, and better, and better. Until this past Saturday he was lively and energetic, sleeping only at night and running his business again. This past week was the third cycle of Vidaza and he’s suddenly lost all that energy again. His doctor leaves town tomorrow and will be gone until late August. I admit that scares me, a lot.

I feel like I still have a million questions about MDS. Yet every time I talk with a “professional” I end up feeling like I already know more than they do. Makes me feel like I’m standing alone in the middle of a swamp with no map. And it pisses me off.

I guess that’s all for now. I glad to have this palce to blow off steam, share a little, and maybe give and receive answers.

[patti]

Virginia,

Don’t ever feel like you can’t stand up to the doctors and tell them what they will and will not do. I have to do it with my MIL’s all the time. They don’t agree with our method of treatment and have thus written her off to die. We’ve never been very happy with her oncs even after switching but at least the latest guy is nice. That’s more than I could say for the first two. Just stand firm, tell them what you want them to do and make them work for you. Unfortunately, you may know more than most of the people about MDS. So here’s your chance to educate them. It doesn’t feel like it should be that way, but it is sometimes. Before your husbands onc. goes out of town can you ask him/her for someone to see why he’s gone so you don’t have to worry so much?

Sounds like your a great support for your hubby. Hang in there, being a caregiver is no picnic either.

BTW, my MIL has very low platelets (6000 at last check) but she never has bleeding problems because she’s taking large doses (9mg 2x’s daily) of Vit. K. It works great. Might help your husband out until his counts come back up to normal. We get ours at http://www.lef.org or vitamin world. The only brand that makes 9mg is Life Extension Foundation. All others are only 100mcg.

Best wishes,

patti

[CarolineG]

Hi Virginia,

I’m sorry to hear of what you are going through. We have encountered some incompetent medical staff with my Dad’s health issues as well. It is frustrating and terrifying when you think that the people whose hands your loved ones life is in don’t know what is going on.

Patti is right. You need to be the one to do the educating if a Professional isn’t as knowledgable as you are where Bill is concerned. Some of them buck any information coming from a ‘family member’ but I just keep on blabbing until someone listens up. So far I have been successful. Once I threatened to carry Dad out of the Emergency Ward and to another hospital before I finally got him some help.

Keeping Bill’s immune system healthy is very important. Alot of people have a very successful regime that they follow using Vitamins, juicing, herbals, etc. If you have some time, go through the last few months’ posts and you will find alot of very valuable information.

I would also have your Doctor recommend another Doctor who you can see while he is away. Things can change so quickly with this disease, you need to know that help is at hand if and when you need it. I think that you live in a rather remote area but I am sure that there must be someone else in Anchorage or somewhere nearby who has some experience dealing with MDS.

All the best to you. This forum will provide you with lots of information.

Caroline

[CarolineG]

Virginia.

Me again. I mentioned that I think you live in a remote area. I’m wrong. Sorry about that. Anchorage is more than twice the size of the city that I live in.

Caroline

[franm]

Hi Virginia:

My husband who will be 74 this July was diag. with MDS over a year ago. He went to 2 onc. in Oct. of 05 and both of them wanted to start him on Vidaza. He had a BMB at that time and it showed 10% blast. He didn’t like either of the Onc. so he got another insurance plan that he pays 200.00 a month more for. Medicare and AARP. Since he went out of the HMO he tired another Onc. She saw him in Dec. 05 and told him to take lots of vitamins; which he did. She did another BMB on the 9th of May and his blast went up to 29; she called him on Friday and told him to start on Vidaza for 7 days in a row. He started on Thursday of last week and finished yesterday. It was really hard on him since they had to do 4 shots in his stomach each day. Anyway he has 3 weeks now to recoup and then he starts again. I just hope that this time isn’t as bad as the first cycle.

Need more info…just ask

Fram

[Lori]

Virginia,
You are your husbands advocate and sometimes you will feel like the one giving the orders but don’t underestimate your ability or knowledge base. Make sure your doctor has reviewed your husbands case with another physician (meaning – tell him you expect him to do this), that he has established a plan of care in the event that any number of issues come up – how low can platelets and hgb go before he needs transfusions, how long can his nose bleed before you need to take him to the ER, medication regimines that he is using or would be started in his absence, will he be leaving an emergency contact number for you or the physician caring for him in his absence. Let him know that you don’t expect to be left to hang out there while he is gone – you might have to use a nicer tone than mine, I was a nurse from 20 years. I know you can do it.
On a lighter note – the Alaska Aces are playing my Gwinnett Gladiators in the Kelly cup this week. Don’t know if you follow but on Monday I will give them one little cheer for you and your husband when they come to our arena in Georgia. Keep your head up and keep expanding your knowledge base – it will help in the long run.
Lori

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